Living with our adult son with autism and epilepsy. Sharing lessons learned from life around me.

What Dad Taught Me in Death

I’ve heard it said that our parents are the most important teachers that we will ever have. I would agree with that statement, for as we grow we are constantly watching our parents……..listening and absorbing and learning through their words and deeds. Hopefully the lessons learned are good ones. My parents were very beneficial in my life in more ways than I can count. Yet some of the lessons that I treasure the most are the lessons I learned as I watched my dad live the last month of his life on earth. What were some of those lessons?

1. Know When to Ask For Help

Dad was diagnosed with lung cancer in 2000, and with liver cancer in 2004. In September of 2008, dad was put into Hospice care. We knew that no more could be done for him medically, so as he declined I told him and Mom to let me know when they wanted me to come and help them. I got that call on November 2, and in a few days I was on a plane headed home. I was fearful of what I would find and how I would handle all the emotion of what was ahead, but I was very thankful that I had the opportunity to go and help my dear parents.

2. Don’t Stop Thinking of Others

Dad had always been very kind and sweet to others, and loved reaching out to help people. This continued even as he deteriorated. I quickly learned that the real reason he had wanted me to come was that he was worried about Mom. He knew that she was physically more frail than she had ever been………..emotionally drained………and that she was showing signs of progressing dementia. He was more concerned about me helping her than of me assisting him. In fact, when I first arrived he resisted my help in several ways. I understood this about him……his independence and his desire to maintain his privacy. She was his first concern, even though he knew he was losing his fight to live.

Later, when he finally allowed Jan and I to assist with his toileting needs, I found him crying one day as he sat in his wheelchair. I knelt down and asked him what was wrong. Through his tears, he told me that he was sorry to have to make us help him in that way. I was so amazed at him…….at his selflessness and his kindness. I assumed he was crying from embarrassment, but his tears were not for him…….they were for us. He told me that he was sorry that he had to make us do this……..sorry for any embarrassment that we might be feeling, but not feeling sorry for himself. I have never seen such love and concern as I saw in him at that precious moment.

3. Keep Your Routine

For as long as he could, Dad continued to get up early in the morning and to stay up as long as he could. He needed help but he did not want to lay in bed all day. He wanted to eat at the kitchen table, sitting there in his wheelchair and eating oh so slowly, often with his head bowed and his eyes closing. Mom and I would speak to him, and he would perk up, slowly raising his head. He would manage another few bites and some soft, slow conversation before slowly nodding off again. Yet he was determined to keep going and to keep his schedule for as long as he could.

He also wanted to read the mail and the newspaper every day even though his eyesight was failing. It was hard to see him struggling to read but he was not to be deterred. He finally had Mom make an appointment with his eye doctor, even as we knew that this doctor visit would be impossible. We didn’t tell him that, though…….we wouldn’t take away that hope that he had.

We would watch Little House on the Prairie videos at night. Dad wanted to still be in charge of the remote – just like a man! He would slowly push the volume button but he had a hard time controlling his movements, so the volume would shoot up sky high. As he tried to correct it, the volume would go to mute. He was frustrated but finally relinquished the remote to me and Mom.

4. Pay Attention to Details

When I first got to their home, Dad was managing to walk with his walker. He was very, very slow…….walking with me by his side, ready to steady him when he faltered or wobbled. Dad was always very meticulous about things and this trait continued. He wanted his sweater on and liked it when the sweater matched his pajamas. As he would slowly walk from room to room, he would sometimes stop and just stare down at the floor or the carpet. Then he would ask what that spot was on the carpet, and as I looked down, sure enough I would see a bit of a leaf or a string. I would laugh as I bent over and picked it up, and Dad would smile as I teased him about being so picky. Yet those small details were still very important to him.

5. Mind Your Manners

Dad was always polite and proper, never crude or inappropriate. I guess that’s one reason why the five of us children enjoyed teasing him. He was great fun but he did have boundaries. One morning as we ate breakfast, Mom……….well………..she had some gas. She laughed and said, “I farted!” Dad very slowly raised his head, looked at her, and softly said, “Passed……..gas.” Mom and I cracked up, and Dad gently smiled – satisfied at his correction and realizing the humor of it.

He was always careful to say thank you when any of us helped him in any way. Close to the end, after I had gone back to Kansas, Jan was rubbing his back and very quietly he said to her, “Do…..not…..do…..that. Please.” He didn’t let his situation rob him of his manners.

6. Keep a Sense of Humor

Dad loved to laugh and smile. He was a delight as he loved to tease in a kind way, and also was often the willing recipient of much good-natured ribbing from all of us. Shortly after my arrival, we had to get him a hospital bed. He was not happy about this and was especially unhappy about having the bed rail put up at night. We had to insist, though, and he finally resigned himself to this fact. One night as I raised the rail, he told me, “Don’t put that rail up. I’ll remember you in the hereafter!” And then when I walked in his room to help him out of bed in the mornings, he would greet me by calling me his prison guard or the great emancipator or other funny names having to do with my control over his freedom.

One day he jokingly said, “I’m sorry for every mean thing I’ve ever said about you. I have to stay on your good side!” And when we bought him silly pajama pants he went along with the fun. One day when Jan and I teasingly asked him which of us was his favorite, he immediately looked straight at his hospice nurse, Amy. Every day there was humor from this wonderful man, even as he was suffering.

7. Show Love

Mom and Dad were very close, especially after they both retired. They were hardly ever apart. When Dad had to start using the hospital bed, it was the first time in nearly 60 years of marriage that they had slept in separate beds. We pushed his bed very close to their bed, and at night Mom would lay there with her hand between the rails of Dad’s bed. They held hands or she would rest her hand on his arm…….still together and still close despite this circumstance.

There were times that I would be holding Dad up as he stood, and there would be a pause. I would turn to look and find that he had put his frail, skinny arm around Mom’s shoulders and was pulling her close to him. I felt like an intruder to this moment of intimacy, and the tears would spill down my cheeks as they embraced.

In the midst of these days, there were times of stress. One day Mom and Dad were facing one of those frustrating moments. I waited in the living room until it was time for me to help him to the couch. I sat there and laid my head on his shoulder, telling him I was sorry for how hard it was at that moment. He smiled his sweet smile, very slowly raised his head, and said, “Smooth………it………over.” I’ll never forget those wise words.

8. Always Pray

Dad continued to pray for as long as he could. His walk with the Lord all of his life was of primary importance to him, and that never diminished even as he was weak and full of pain. One of my dearest memories of my time there was of his quiet, halting prayers before meals. He continued to lead us in prayer for as long as he was able. He rarely asked anything for himself, but thanked the Lord and then made requests for others. When my niece, Ruth, had a tumor removed from her spine, Dad was heart broken for her. He would always pray for Ruth, sometimes with tears. Always thinking of others………..that was my Dad.

9. Be Ready to Go

Dad was afraid to die. This fact puzzled me at times, although I do understand. It’s just that Dad had such a close walk with the Lord and I was surprised at his fear. However, as we talked I realized that he was afraid of leaving Mom…….both for her sake and for his………both of them without the other for the first time ever. He was looking forward to seeing Jesus, but wondering what he would say to his Savior. Dad liked having everything thought out and orderly, and this dying process was anything but orderly and known.

Finally one night, John spent some time talking alone with Dad…….assuring him of things about heaven and answering his questions. This comforted Dad greatly, and later that night Dad shared these things with Mom and me. Our hospice nurse had told us that often a person needs to be released to die, so that night through our tears we told Dad that it was all right for him to go on to heaven……….that we would be fine and most important, Mom would be well taken care of.

A few days after that conversation, on Dec. 4, I tucked Dad into his bed at night. I adjusted his oxygen and did all the other things I had done so many times over that past month as I got him settled. But this time was different. I was leaving early the next morning to fly back to Kansas and to my family. Dad knew it was time for me to go, but I think he was afraid. Jan and John would be there, but I had been with him full-time for a month and he had come to depend on that.

As I leaned down to tell him good night, the tears fell. I kissed him, and then he asked me if I would come back after Christmas. I assured him that I would, even as I knew that it was unlikely he would be there at Christmas. One of the hardest things I’ve ever done was to kiss him that last time and walk out of his room. I went home to Kansas the next day, and Dad went home to heaven five days later. Oh, we miss him!

But I am ever so thankful for that month with him and with Mom, and for so many special memories shared and lessons learned. What a hope we all have, too, as we know that we’ll all be together in heaven one day. I didn’t get to see Dad again as I assured him I would, but I do have the assurance that I WILL see him again………..for eternity.

And I want to thank him for all that he taught me in life, but especially for what he taught me in death.

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Author: hesaidwhatks

I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.
View all posts by hesaidwhatks

Patty – it has been a while since I’ve read your blog…you likely know this. And…you probably know this particular story touched me at the time of caring for my mom & dad through their sicknesses & trials. So thank you for sharing and be assured this will touch others as it has you and your family. God bless you & your’s this Christmas!